and his will to live

It’s been quiet

because Lennon and his brothers went to their dad’s house!!! This is good but also a difficult experience for me because it gives a lot of room for thought that I don’t usually have much time for. I am humbled and often reminded about how lucky he is and how inspiring he can be. Stories in the facebook world, or even on the tv remind me that he is doing well but it doesn’t take out the fact that he’s still sick and still battling for his life, silently.

Why silently? Let me recap.. Lennon’s EBV levels are still up quite a bit and the doctors wanted a ct scan. The result is that Lennon did develop some lymphnodes that essentially are a cause of concern as this could mean he may develop PTLD (post transplant lympho-something disease). There was a discussion on how to proceed and the idea was to do a biopsy on one of the lymphnodes, essentially the largest one. Well, when we went in for the assessment, the dr. decided..lets not do the biopsy. Why? Well its simple…Lennon looked (and still does) really really good, he doesn’t appear to feel ill ..was active and interactive with the staff and the lymphnodes are rather small. So we went home…

Lennon is enjoying school though he doesn’t talk too much about it.. he is still very focused on his video games and the newest fascination…army dudes. He’s still very much focused on death and dying and its difficult because I don’t know how to approach it..do I leave it alone? Part of the problem is comprehension on Lennon’s part…the severity or the reality well not sure any 6 year old truly gets it.

So I am happy he’s doing well, but I am cautious about letting down my guard…feeling and knowing that things could turn.. the fact that he has the opportunity to spend time with his dad (and his brothers) means a lot to me..not because I get a break (though that is good too) but because it gives him some independence away from me.

As I sit her tonight viewing statuses, knowing that my nephew is fighting for his life and watching television I am grateful, I am humbled. My thoughts go out to my nephew and his family as he’s fighting for his life. It’s difficult not knowing what is wrong and its even more challenging to be patient. My thoughts go out to my aunt in Florida as she is recovering and friends who have family members fighting for their lives every day. I think about each and everyone of you!

While the last 5 days were very quiet (though I was battling a terrible cold) I am ready for all the kids to return and bring the noise back! I will never know what the future will hold, but I can live today!

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2 thoughts on “It’s been quiet”

So glad you've had this chance for some quiet time. "Think time" isn't always the most enjoyable as it can bring some scary and worrisome thoughts, but it's necessary for one to be able to process things and carry on. Hope that you feel refreshed, renewed and ready to tackle things again with the kids home.Thanks for the update on Lennon's condition also. What a struggle it must be to not know where Lennon stands and to always be fearing the worst. While I have been there and know the feeling of wondering when the end will come, I hope and pray that things will turn for the good for Lennon and the constant fear of "what next" may leave and some peace and normalacy may come to your home.

You are such a strong/powerful person. You have a real gift of a caring kind heart that will be with you the rest of your life. Lennon is really lucky to have you-and that goes both ways! There is a reason, for all of this…maybe its to give others hope, maybe love…but your part of a plan and I am blest to have been apart of watching it unfold. God Bless you and your family….Your a blessing to us all!